La pratique régulière d’activités physiques améliore tant le bien-être physique que psychologique et peut s’intégrer en toute sécurité aux habitudes des personnes atteintes du syndrome de Marfan. Ces personnes sont par conséquent encouragées à adapter les mesures sanitaires qui les protègent des caractéristiques de Marfan qui pourraient s’aggraver et des affections qui font simplement partie du processus de vieillissement. Grâce à un diagnostic, un traitement et des adaptations apportées au mode de vie de façon précoce, de nombreuses personnes atteintes du syndrome de Marfan peuvent désormais envisager une espérance de vie normale.
Related Resources
Referral Letter and Features Chart
We created a template referral letter for you to use to simplify the process when you are referring a patient to a specialist for further evaluation or testing for the diagnosis of Marfan syndrome or a related disorder. The letter makes it easy for you to note the features you observed that raise your suspicion of these disorders.
Tags: All , Healthcare Professionals
MASS Phenotype
MASS Phenotype is a connective tissue disorder that is similar to Marfan syndrome in that people with the condition have the similar Mitral valve, Aorta, Skin, and Skeletal features. People with MASS phenotype do not have lens dislocation, but rather myopia (nearsightedness), and do not show progressive and dangerous aortic root enlargement, hallmark features of Marfan syndrome. What other […]
Everest Grant
This is a large, multi-institutional, transformational grant designed to “reach the summit” on a critical path to a breakthrough in basic or translational science that has direct relevance to human health. It must include an institutionally funded graduate student or fellow. Engagement of multi-disciplinary investigators or pharma is highly desirable. Single grant of $200,000 per […]
Tags: All , Healthcare Professionals, Researchers
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